Patient experience: Helen Muende

Interview: Clare Finney

You wouldn’t know I had a pacemaker. I am sitting here in a skinny sweater, and there is no great lump above my bosom. I could wear a swimsuit and you’d not see it. I know a lot of people with pacemakers, but what appealed to me about the leadless pacemaker is that it doesn’t need so much monitoring because it has a battery life of 13 years rather than seven, it leaves no visible scar, and it is so delightfully small.

I had known for years that I had an uneven heartbeat. It was first spotted when I presented myself at the doctors with suspected concussion after a bike crashed into me. She said: “Well, you may or may not have concussion, but you certainly have an uneven heartbeat.” I was put on anticoagulant medication. Four or five years later, though, I realised that I was starting to get very tired.

I got breathless walking up hills. I live in a very hilly area and I have exercised all my life, so I would always push myself—but it wasn’t getting better. In fact, it was getting worse. I didn’t really think about it too much until I went to the hospital to have a cataract removed. The operation went well. In the recovery room bells started ringing. I heard a nurse say, “We have a patient here who…” and she muttered something to her colleague. Apparently, what had happened was that my heart rate had gone down to 30 beats a minute. I had to stay in hospital overnight. The surgeon called the cardiologist, and the cardiologist recommended I see Dr Segal at The Harley Street Clinic.

On meeting him, I felt complete confidence. He was very matter of fact, he wasn’t too smooth and he wasn’t intimidating. I had also received a glowing recommendation from a friend with similar problems to my own. Dr Segal confirmed it was my heart that was the issue. My father’s family had a very bad history of heart problems, and I always suspected one day I would have to have a pacemaker—though these things always arrive much sooner than you expect. Dr Segal said I was very eligible for this new kind of leadless pacemaker: I am not overweight, I am not diabetic, and I have a very active lifestyle.

The surgical experience itself was not frightening: I went in ostensibly as a day patient and when I went into the operating theatre, the anaesthetist said it would be preferable for the operation to be performed with tranquilisers and local anaesthetic rather than a general anaesthetic, because the recovery time is shorter. I said that was okay, and was tucked into a capsule with white foam on the bottom, like they use for astronauts. It was warm, like having an electric blanket underneath me—and, well, it was probably the tranquiliser, but I started to feel very calm. It was actually very interesting.

My husband was a surgeon and hospital films and programmes were forbidden in our house. I’m not that keen on them myself, but I thought I’m here now, I may as well watch. I couldn’t see what they were doing exactly of course, but it was interesting observing people come in and out—like being on the set of Avatar. I was very tired afterwards.

Dr Segal came to see me and because I live alone, he agreed I should stay overnight at The Harley Street Clinic. The only thing that went wrong was that I had a small haemorrhage when I went to the loo because of the anticoagulants I had been taking. Dr Segal had stopped the anticoagulants prior to the operation, but there must still have been some left in my bloodstream. Still, a team of nurses and doctors stopped the bleeding easily enough. It wasn’t a painful experience.

I consider myself very fortunate: all of my father’s brothers departed this earth at the age of 60. Before the operation I could see my life going downhill, and now I can enjoy my morning dog walk, climb the steep

hill I used to go up for coffee, and not have to push myself at all. Last week I went to the Royal Academy of Arts with my cousin, and we got half way round the exhibition and she said, “I can’t go on”—and I felt fine! I went on to do some shopping, in fact. The pacemaker has made an enormous difference to my life, and resolved many confidence and anxiety issues that I had because of my awareness of my family’s history.

Last summer I went to Canada and to Iceland—one of my bucket list destinations—where there are of course a lot of mountains. I ascended one at midnight to see the northern lights, which appeared like beautiful blue and green curtains shimmering in the sky. I certainly wouldn’t have enjoyed this extraordinary experience if it hadn’t been for my pacemaker.

What is a leadless pacemaker?
Dr Oliver Segal, consultant cardiologist at The Harley Street Clinic

The traditional pacemaker consists of a battery fitted just under the skin below the collarbone, linked up to ‘pacing leads’, which are fed through blood vessels to the heart. At the end of each lead is an electrode, which is attached to the heart muscle and allows precise voltages to be applied.

Pacemakers work by recording the heartbeat and, if it falls below a certain rate, sending an electrical pulse down the leads and into the heart muscle. This pulse spreads through the heart, causing it to contract. But while the traditional pacemaker has saved millions of lives, its combination of battery and leads poses several risks, the biggest of which is infection. When you change the battery or leads, you are opening the device up to the air, and bugs can get in. Once an infection has taken hold, the patient may need major surgery to replace the pacemaker and require a long stay in a hospital while the infection is treated.

Also, removing old pacing leads can be a difficult process. It is possible while removing or inserting the leads to inadvertently damage the lining of the lung, puncture the artery you are passing the pacing lead through, or damage or puncture the heart wall.

The leadless pacemaker has been around for a couple of years and uses similar technology, but everything has been miniaturised. The battery, the electrodes and the mechanism that fixes the device to the heart wall are all built into one small housing. It is so small, it can live entirely within a chamber of the heart, eliminating the need for leads.

Leadless pacemakers have radically reduced the risk of infection. In more than 2,000 cases using leadless pacemakers so far, there has only been one case of infection. No procedure is completely risk-free, but complications caused by leadless pacemakers can generally be fixed very quickly, and have not been the kind to cause long-term problems.

Leadless pacemakers are fairly new technology, so there is still work to be done. Currently, they are only suitable for people who need stimulation in one chamber of the heart—traditional pacemakers can stimulate up to three chambers. Hopefully, we will soon develop the technology for individual pacemakers to be placed in separate chambers, but for this to work, the communication between them has to be incredibly robust, so that they work with and not against each other.

We wirelessly download the information that the pacemaker collects and it can all be stored in the cloud, which the consultant has access to at all times. If either the heart or the device moves outside set parameters, a warning is sent to us, which means the consultant will often know that action is required even before the patient does.

The big winners are the patients. The battery life is about 13 years—longer than the traditional pacemaker—which means fewer visits to people like me. And when the battery does run out, we can add a replacement pacemaker without having to remove the old one—the old unit has no negative impact on either the heart or the new pacemaker. This is a major advantage, as it can be very difficult to remove pacing leads that have been in situ for many years.

Finally, patients will soon be able to access information about how their device is operating, via an app on their phone. This will bring real reassurance if they are feeling unwell, as the natural inclination is to worry that the pacemaker has malfunctioned. The app will offer the assurance that it is operating properly, and that what they are feeling is simply one of the usual illnesses that happen to us all.